BioEd Online

You have just written the book When Illness Goes Public. What's it about?

It's a series of case studies of either famous people who became sick or people who became famous because of their illnesses, and it examines what lessons their cases taught the public about medicine and medical ethics.

The early famous patients were drawn into going public with their stories. Lou Gehrig, the New York Yankees first baseman who got ALS [Amyotrophic Lateral Sclerosis] in the 1930s, became a magnet for others with neurological disease and a reluctant spokesperson.

But over time, celebrities have become more like activists, championing the diseases in question and raising money. Lance Armstrong is a great example. He got testicular cancer and sought out the best care. But then he started a foundation and produced the yellow Livestrong bracelets to raise money. He's a sophisticated version of a modern ill celebrity part patient, part fundraiser, part cheerleader.

What impact do these celebrity patients have?

People who develop these diseases see the celebrities as of immediate relevance to them. Their stories are very important and give them hope and a roadmap of how to get care.

On a policy level, if you're interested in publicising a disease and getting funding, then the best thing to have is a celebrity spokesperson. Joe Schmo doesn't get in the door of Congress. Michael J. Fox gets in the door of Congress.

Can celebrity advocates have negative impacts?

Yes, they can create false expectations. When people get ill, they may not have the same resources as celebrities, and even if they do, they might not have as good an outcome.

Then there is the issue of competition. Diseases that deserve funding can go unfunded because they can't find an advocate and advocacy groups deflect money into specific diseases as opposed to broader funding across diseases.

Is there an example of that kind of imbalance?

Breast cancer is one example of a disease for which advocates have raised gobs and gobs of money. Scientists say there are similarities between breast cancer and other cancers, but the high profile of breast cancer makes it difficult to fund research on cancer broadly. Money has to go to one cancer or another. The hope is that prostate cancer people are talking to breast cancer people, but the amount of funding going to specific diseases is not proportional to the number of people dying.

Don't people complain about that being unfair?

There is some frustration from advocates for a disease without a celebrity spokesperson but they just say they need to find a spokesperson. They are not saying that the system is wrong. It's very American. Part of getting ahead is using connections and working your way to the top and this is one way to do it.

Are researchers under pressure from celebrity patients?

Celebrities and activist groups have very high expectations because they can point to a few very well-known research successes. The sense is that if you put enough money in there and work hard enough, you'll get a breakthrough. It's a dangerous assumption.

Herceptin, the drug for breast cancer, is one example in which dedicated funding clearly helped develop it. But it hasn't really been duplicated with other cancer therapies.

If an experimental therapy moves too quickly, then it's bad. But you are always toeing that line between helping people quickly and letting science proceed at its own pace. Usually scientists are right, I suppose, if they say they need to do tests for some time before clinical trials. But families of patients can't stand that caution. That tension is always there.

Can celebrity patients sometimes back bad science?

Sometimes celebrities advocate things outside the scientific realm, things that are truly unorthodox. Steve McQueen got mesothelioma, went to Mexico and took 50 enzymes and vitamin pills daily as well as laetrile, and coffee enemas. As a result of the publicity, thousands followed in his footsteps. Then McQueen died and it presumably didn't help anyone else either.

Tom Cruise is another one. He called into question basic psychiatric assumptions [Cruise has publicly challenged the science behind psychiatric conditions such as depression and the need for drug treatments]. Because they are celebrities, the media broadcasts their beliefs and there is a danger that patients may then do things that are not scientifically tested.

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